I have thyroid disease and also diagnosed with Chronic Fatigue Syndrome co-morbid (co-occurring) to it. I've had struggles at times getting proper treatment and without trying to sound too derogatory toward doctors, many of them are not as updated on their knowledge and treatments as they should be. Many thyroid patients go through 4 or 5 doctors before finding one that can treat thyroid problems adequately or optimally. For me, it was the 5th one that I ended up keeping because she works with me better than all of the previous ones. I really believe the best thing is to get an Endocrinologist or doctor of whatever MD title that specializes in thyroid. Some Endos treat/specialize in diabetes and thyroid is less of a subject for them, so in my opinion need questioned by a patient about their area of expertise before a final decision in choosing one.
Because of problems patients have getting doctors who are specialized and who have compassion rather than sluffing off patients with mediocre or less care, patients have to be proactive in their treatment or it will most likely be inadequate. I know this sounds sinnacle but I've learned this through correspondence with 1,000s of other thyroid patients since the year 2003. This is not to say there aren't terrific doctors out there because there are but patients have to check up on where their treatment is going because there are doctors who under-treat their patients. There's also such a thing as over-treatment but happens far less often because some doctors would rather keep patients slightly hypothyroid than hyperthyroid.
The ways patients self-advocate and partner with their doctors, is by also self-educating about thyroid hormone replacement treatment. You find out what the better specialists out there state as being the level a treating doctor needs to place your TSH and thyroid hormone levels at (T4 and T3) with replacement hormone. Patients who feel this is too much trouble may be forfeiting better treatment. Most doctors will listen to patients who have some knowledge about their treatment and who suggest to their doctor where they believe their treatment levels need to be. The doctor of course would want any adjustment in treatment to remain within normal values (normal lab ranges) but would likely be willing to give a patient trials of doses that help better optimize their treatment.
What I've been doing as a Thyroid Patient Advocate, online, is to take the better information out there offered by The American Association of Clinical Endocrinologists, the National Institutes of Health and well known, reputable Endocrinologists/MDs and helping get that info out to fellow patients. It also came from my own struggle with getting proper treatment and with certain symptoms that were difficult to get resolved even with proper/adequate and even optimal treatment. It also came from the fact that co-morbid conditions often happen with thyroid disease, other things can branch off from it in other words, like CFS, fatty liver, diabetes and other autoimmune and endocrine diseases but patients are often not informed of these risks by their doctors. I wanted to know everything about how this disease might affect me and I did so by years of online search. Patients have a right to know everything about a disease that affects their lives!
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